#98985 07-07-2009 09:06 PM | Joined: Jul 2009 Posts: 7 Member | OP  Member
Joined: Jul 2009 Posts: 7 | Hello Everyone,
I've been reading a number of posts here since last week when my mom, a 66-year-old otherwise healthy and beautiful lady was diagnosed with SCC in her jaw.
Ok. A little background...
After the initial diagnosis from the biopsy, she had an MR and PET scan.
Today we got the news that she is a stage 4 (from the MR read) with cancer in the lymph nodes in her neck. We are waiting on the results from the PET. We do not know if she has distant mets yet...
She lives in Laguna Niguel, CA (I believe that Brian Hill lives there also). At this point I am just trying to find recommendations for treatment. Her internist recommended City of Hope for surgery and chemo/radiation.
Any help or info will go a long way. I'm sorry for the long post, but I wanted to do a thorough introduction.
Thank you all. I think this is an incredible community... I can't imagine support before foundations and forums like this existed.
-SCCSon
Last edited by SCCSon; 07-07-2009 09:07 PM.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Make an appointment with a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm now if it's possible. Do not wait any longer. I just feel your best chances for the best Tx will come from a CCC. This cancer is treatable (read my Signature Line and many others that had a Stage IV) but it's best to treat it properly the first time. Her Tx will probably involve surgery first, then concurrent chemo and radiation which will involve different specialties so it's important to try and make sure you have assembled the right team to do that. Read everything you can on this site and you will learn a lot. This site is also devoted to Caregivers so it will help you do your job as well.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | I agree with David, the sooner the better getting her to a CCC.
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jul 2009 Posts: 7 Member | | OP Member
Joined: Jul 2009 Posts: 7 | David and Kevin,
Thank you so much.
My mom is going to City of Hope today. I am working on getting her to a CCC doctor there ASAP based on your recommendation.
We are still waiting on the PET scan results, but that's not holding us back.
David - I love your signature line. I hope you're enjoying a little of the Tour and putting in your "centuries".
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Not sure I understand your statement " I am working on getting her to a CCC doctor there ". The CCC refers to a cancer center, not a doctor. maybe I misread you?
We have been having a weird few weeks here lately with am showers and tons of wind in the am and that's when I rides so I haven't been able to ride in over a week and I'm getting out of riding shape. Normally our weather pattern this time of year is clear calm am's with pm thunderstorms which is perfect for me.
Tour is really interesting so far and I'm really surprised how well Lance is holding up considering his layoff, broken bone a short time ago and his age. His strengths were always the time trials and the mountains so we'll see what happens Friday when they hit the hills. If his team can solve it's growing leader dilemma then perhaps he can go the distance.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | SCCSon...
Welcome to OCF. You will find lots of guidance here. First thing to remember is that everyone is different. Surgery is not always the first treatment avenue. There are also chemo and radiation that may be used instead or in addition to surgery to cure your mother.
Its very important to get her seen by a team of doctors at a cancer center. This will give you a wide range of different doctors who will work together on your mother's case. A second or even a third opinion is also important.
Best of luck with everything.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2009 Posts: 7 Member | | OP Member
Joined: Jul 2009 Posts: 7 | Hi David, Yeah, I wasn't clear. My mom is going to City of Hope (a CCC) to see a doctor. They are going to call today with the appointment and I'm thinking we'll have her up there this afternoon. I'm anxious to see how Lance does in the mountains too... Old man they say? We'll see. I guess after poking at the Germans a little he has to ride hard  | | | | | Joined: Jul 2009 Posts: 7 Member | | OP Member
Joined: Jul 2009 Posts: 7 | | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | SCCSon,
Funny article today on the WWW ranks the French as the WORLD'S WORST tourists. Says they are cheap and arrogant. Frenchy says it's because they don't travel since they have everything they need at home.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I understood what you said a ccc dr Geez David, That ewas self explanatory LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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